C Diff Foundation Launches Patient, Family Support Program

Posted on by CDC's Safe Healthcare Blog
C. diff. Nationwide Community Support (CDNCS)
C. diff. Awareness http://cdifffoundation.org/

Guest Author: Nancy Caralla
Executive Director of C Diff Foundation

C. difficile (C. diff.) infections are responsible for almost half a million infections and at least 15,000 deaths each year in the U.S.

A C. diff. diagnosis can be traumatic. Many patients, as well as family members, experience a wide range of emotions including confusion, anger, fear, panic, and denial. To help alleviate anxiety and distress, the C Diff. Foundation recently introduced the C. diff. Nationwide Community Support (CDNCS) program, providing patients and their families an opportunity to talk with others who have experienced the same diagnosis and symptoms.

Before the launch of CDNCS, there was an absence of professional C. diff. support groups in the U.S. However, there is evidence showing that people who attend support groups have a better understanding of the illness and treatment choices, develop a more positive outlook, and a better ability to cope and adapt to life during and after the treatment of a C. diff. infection.

The CDNCS program is reaching C. diff. patients, families, and healthcare professionals nationwide. This growth reflects the valuable information the CDNCS groups are providing; grief counseling, nutrition, financial support, C. diff. prevention, treatments, and environmental safety products availability, homecare, patient-safety, pharmaceutical assistance programs, and C. diff. survivor sessions.

The CDNCS groups are available to all individuals via teleconferencing, with Foundation team leaders and Medical Advocates hosting sessions from Maryland, New York, Florida, Missouri, Colorado, Ohio, and Oregon. Each session is limited to 15 participants.

To participate in any CDNCS group, register through the Nationwide Hot-Line (1-844-FOR-CDIF) or through the monthly schedule available on the website http://cdifffoundation.org/.

Nancy C. Caralla, Founder & Executive Director of the C Diff Foundation
Nancy C. Caralla is a three time C. difficile infection survivor who has 23 years’ experience in the nursing profession blended with over 25 years experience in international construction management. Over the past two years, Nancy in partnership with Foundation members, has focused on raising C. difficile awareness through education, and advocating for C. difficile infection prevention, treatments, and environmental safety worldwide. The C Diff Foundation is a non-profit organization and takes great pride in their volunteers, chairpersons, and committees. Their mission reaches across the nation and is presently in twenty ststes and growing. We are all working together to achieve a mutual goal: a reduction in newly diagnosed C. difficile infections worldwide.

Posted on by CDC's Safe Healthcare Blog

20 comments on “C Diff Foundation Launches Patient, Family Support Program”

Comments listed below are posted by individuals not associated with CDC, unless otherwise stated. These comments do not represent the official views of CDC, and CDC does not guarantee that any information posted by individuals on this site is correct, and disclaims any liability for any loss or damage resulting from reliance on any such information. Read more about our comment policy ».

    I am terrified after reading these comments. My gastrontologist never warned me of the dangers and precautions that need to be taken.
    I don’t want to go back to him but don’t know who to turn to. I don’t know what to do.

    I did fmt…saved my life…I had recurring Cdiff ..I thought my life was done…vancomycin only barely kept it in check….fmt cured me…restored my appetite, took pain away and now 8 month later I can eat pretty much everything again with no worries.

    Contracted C-dif Sept. 2019 and meds helped me. Continued to feel tired and stools stayed mushy and far apart. I use to be healthy and regular with BM’s and now I seem to have to take a suppository to go which is a concern. I contracted a bad UTI and have been in the hospital since January 16, 2019. Had Ultrasound of kidney and bladder, Dr said the report was okay. After another suppository my soft mushy stool was tested and I have C-dif but just gas, not loose stools so not being treated. I am a Carrier and will have this into the future. Always worrying if those I love will get sick. This sucks…you get no treatment unless so sick you can die and no cure. My life as I had known it is gone. Now I will live to not spread to others.

    Please help me I’ve been fighting this since January of this year almost a year now I get put on vancomycin then told I’m fine it keeps recurring over and over this is my fourth time if im told im fine then I go out in public on their word the doctors I’m not sick and in fact I am wouldn’t that put other people and risk to catch this including putting myself at risk for hospitalization or death ? This is not good infection disease spread why can’t I just get better why won’t they treat me ?

    There is no guide for C. diff. Even the hospital only gave me an instructional on diarrhea nothing about C.Diff. Please consider creating an informational flyer or guide to surviving c. diff. Please consider including the following facts, as they were very beneficial! Some of the information is online but scattered everywhere.

    C. Diff facts:

    If you are having diarrhea more than 3 times a day or longer than 3 to 5 days see your doctor and insist on being tested for c. diff. Do not wait for a fever, as not all case of C.Diff come with a fever. I never had a fever and was a sever case.

    Yes, you are contagious. You should always treat your self as contagious when you have unexpected diarrhea. And technically you will always be potentially contagious as a carrier of c diff spores. Spores are very tough and not killed by antibiotics. Therefore, you should always use precautions such as washing your hands with soap every time you use the bathroom. If possible do not share your bathroom.

    Yes, C.Diff can return. Most defiantly if you need to take an antibiotic for another illness. Use precaution inform your doctor you are a c diff carrier and ask for flagl or vancomycin to be taken at the same time as your treatment antibiotic.

    Yes. C.Diff does appear to affect some patients cardio; rapid pulse is a symptom of c. diff. With time your pulse should return to normal. Consult your doctor if your pulse remains marketed higher for longer than a month following as this is also a symptom of sepsis.

    Wash your hands with soap every time you use the restroom!

    Dry your hands off with a paper towel or napkin so it can be thrown away, now is not the time to be fragile and use rags or hand clothes.

    Cover furniture you use daily with a blanket or sheet so it can be thrown away or plan to have your furniture professional cleaned.

    Use a bleach solution like Clorox Healthcare to kill c diff spores in your environment.
    Throw away underwear daily. Yes, this means you will need to restock. But it is better than contaminating your laundry machine.

    Use bleach in your laundry machine for whites and under things if you are not throwing them out.
    Hot water in the laundry machine will kill other germs to help your immune system, so use the hottest water you can when cleaning your clothes while having diarrhea. It will not kill C.Diff spores but it will help from catching other illness and complicating the matter.

    You may need to check your furnace to make sure it is set to heat the water hotter adjust to the hottest setting possible and inform other household members that the water will get hotter, so they avoid scalding.

    Your diet should be monitored. Watch what you eat and avoid what irritates your system. Common foods that produce gas should be avoided. Sugar should be avoided. Some people get a dairy intolerance, but you should only avoid dairy if you get the intolerance as fermented foods help feed probiotics. Some people need to avoid raw vegetables and red meat. Grains can be a problem for some. Again, simply pay attention to your body’s reaction to foods. Everyone’s body is unique so there is no once size fits all diet. Foods with prebiotics and probiotics in them may be helpful in restoring your gut to a healthy bacteria balance. Consider regular yogurt, Greek yogurt, sauerkraut, buttermilk (uncooked), sour dough bread, pickles (not in vinegar). There are many websites with list of probiotic and prebiotic foods.

    Take probiotics such as Cultural with lactobacillus daily. It is bacteria based. Also consider taking Florastor as it has show to be helpful, it is a yeast-based probiotic. Probiotics should not be refrigerated. Yeast based probiotics and can be taken any time of day. Bacteria based probiotics need to be sealed can kept in a dark place as light affects them. They are also susceptible to acids and should be taken 1 hour after a meal so the stomach acid has had time to reduce. Do not take probiotics with tap water as the chlorine that is designed to kill germs in the water will kill your probiotic.

    After diarrhea has stopped replace your toilet seat. Wood ones are porous and could have become contaminated. Plastic ones wear and crack and could also be contaminated.

    Throw out your shower curtain and sheets and buy new ones.

    Most doctors suggest probiotics to help restore gut health, continue them for at least the first year. Do not stop when symptoms stop. The antibiotic have killed the adult c. diff producing gas and diarrhea, but not the c diff spores. It will take time to get enough good bacteria into your system to keep the c diff spore under control.

    Expecting to instantly jump back full swing in to work etc. is a mistake that may cost you a reoccurrence. Pace yourself and allow your body time to fully recover. The average recovery time for C.Diff is months. Just because diarrhea has stopped does not mean the damage C.Diff caused to your insides is completely healed.

    Continue to stay very hydrated, using medications like Pedialyte Advance Care to maintain electrolytes is important, for at least the first month after diarrhea has stopped.

    I was diagnosed with c.Diff in May 2019 and Pseudomembranous colitis as a result. Initially, from ER started on a 10 day course of flagyl which I completed. Then saw infectious disease physician on day 12 and he put me on vancomycin for 10 days. Symptoms improved but not go away completely. Recheck for c.diff with stool specimen showed negative result. At that point, I was still having abdominal pain and frequent stools. After second severe episode of abdominal pain, vomiting, and diarrhea with mucous and blood in it I returned to ER was given fluids and another round of vancomycin for 7 days. Symptoms improved, but was still having loose stools. Returned to infectious disease physician and put on cholesteramine powder. I did not tolerate that – it was like swallowing sand! Only took it for 3 days. Then I developed a UTI and had to be on Bactrim for 3 days. That made me very nervous! Held my breath hoping things would not get worse! Last week after eating prime rib and salad, started having abdominal pain again that was crampy, bloating and very uncomfortable! Called my PMD after putting up with it for 4 days. Had to get stat repeat CT scan and labs . Labs where normal. CT showed some area of bowel wall thickening. This is making me very nervous!! I have appointment today with GI. Has anyone ever had this as a result of C Diff and Pseudomembranous colitis? Can it be from the damage to colon from the c.diff?

    I am looking for a support group to help me with my depression from being sick for so long. I’ve been suffering with C=Diff for almost a year now. In June 2019, I had a CDT done at the hospital. I felt a little better for awhile but not well enough to get back to my normal life.
    Is there a blog that we, the sick-O’s, can correspond to each other on. I’ve isolated myself from my fellowship because of all the hugs and hand shakes that we share between us. I’m afraid of infecting another person with this God awful disease. Yes, I called it a disease because there seems to be no end to it.
    Anybody out there??

    I have been diagnosed with cdiff due to smell. I have diarrhea mucus and blood spots in my feces. I was put on antibiotics and told to see specialist on March 5th 2019. My concern is also the contagious part. I am contagious right

    On 10/23/18 I began a 10-day course of Amoxicillin for a urinary tract infection (“UTI”). On 11/8/18, while driving to another state, I stopped to use a public restroom at a gas station, or fast food establishment where I purchased and ate a grinder-type sandwich containing turkey, guacamole and some vegetables. Overnight on 11/8/18, while in the other state, I developed fever and chills with shooting pains in my neck and head, and began having frequent urgent, explosive, watery diahrrea several times a day for a few days. Fever and chills subsided after 2-3 days. On 11/11/18 I returned home. Diahrrea lessened but persisted, as well as loss of appetite, weight loss (about 10 lbs. over 2-3 weeks+/- thus far) and general malaise. In late Nov. 2018/early Dec. 2018 I submitted a stool sample for testing for C-diff before traveling to another state from 12/8/18 through 12/17/18 to visit my daughter who was near death in the hospital from several issues including but not limited to a severe, persistent C-diff infection that was discovered while she was in the hospital (I didn’t know about her C-diff before traveling to see her). On/about 12/10/18 I learned that I tested positive for C-diff Toxin B and from 12/11/18 through 12/21/18, I began and completed a 10-day course of Vancomycin, 200 mg. 2x/day. After finishing the Vancomycin, thinking I was “cured,” I began taking a multi-strain probiotic. On 1/22/19, I learned that my retest post Vancomycin, was positive for Toxins A and B (noticed return of mild to moderate symptoms on 1/20/19). On 1/23/19, having lost a fair amount of weight and feeling weak, I stopped taking the multi-strain probiotic (having learned that doing so can exacerbate symptoms of C-diff), stopped taking multi-vitamin and other supplements, made dietary changes to support/promote/restore gut health/microbiome decimated by antibiotics, and began taking 1 capsule/day (a.m.) for 3 days of Jarrow’s preparation of Saccharomyces Boulardii (a yeast derived from Brewer’s yeast that combats yeasts C-diff and Candida Albicans – (“SB”))+MannanOligoSaccharides (“MOS”) (5 billion viable cells minimum SB per capsule and 200 mg. MOS per capsule), increasing to 3 capsules/day (a.m.) for 3 days, and increasing to 5 capsules/day (3 in the morning and 2 at night) today, 1/29/19 (I will adjust downward if constipation begins, to allow C-diff to continue passing through my system). Since making the dietary changes, taking the SB+MOS, drinking at least 8, 8 oz. glasses/day of water/clear liquid, and getting lots of rest, diahrrea has been kept at bay/in check (some less than formed stools, but no urgent, explosive, watery diahrrea at all), symptoms have lessened (abdominal discomfort is nearly gone and stools are more normal), energy has increased and I woke up this morning feeling better than I have in months. Doctor has recommended a course of Difficid which I have not started, but may do so, continuing with dietary changes and SB+MOS.

    I have been suffering since June 2018. I am a normally very healthy 34 yo female that first presented with persistent dizziness and ongoing diarrhea; no prior recent antibiotic use or visits to a hospital or nursing home. After 2 trips to the hospital was diagnosed with colitis and sent home with Flagyl. After finishing that my symptoms returned with a vengeance and I was referred to an infectious disease specialist that did a stool test and low and behold my PCR for c diff was positive. 1 10 day course of dificid and then was started on vancomycin because my symptoms persisted. I have had days within these last 3 months that I’ve felt more like myself but I am struggling with how terrible I feel all day every day. I am always tired and feel weak and have tremors that wake me up at night and sometimes last for hours. I feel generally unwell all the time. I’m continuously told by my physicians that it’s probably anxiety. Of course I’m anxious over how terrible I feel but is this normal and for this long? I’m desperate to feel better as I’m also a mother of 2 small children and it’s so hard getting through the day like this. Please help!

    After a ten day hospital stay, I was discharged.
    I left with an indwelling catheter and of course
    pee bag. I was so weak, my legs just buckled the first time they let me stand up, I still had
    an appetite. I then had diarrhea for three months. All this time trying meds. Finally a stool came out solid, soft but solid. The name of the drug Viberze,

    On May 1, 2018, I went to the emergency room b/c I had pain in my left abdomen for a few days. The doctor in the emergency room ran a 4 hour CT scan, he stated it was diverticulitis gave me antibiotics and sent me home. On May 4, 2018, I returned to the same emergency room and was told I have C.Diff they put me in an isolation room for 5 days, this hospital was dirty including the room I had to stay in. They never cleaned the room bathroom or even changed my sheets! Around a week later after being released with Vancomycin. I went to another hospital and another CT scan blood work and released again with a possible hope my stool was forming in my colon. Its been a month now since this all began, it’s starting all over again! I have also noticed I have no energy can’t sleep and my mood swings, cannot focus on anything. The pain is back and now my doctor wants to try another round of Vancomycin AGAIN! I would like to know if anyone else feels these uncontrolled moods?

    I have had c.diff since Feb, 2018.
    The doctor tested me at 4 weeks for c.diff. put me on flagel for 10 days. I went back after 16 days with continued symptoms.
    After 7 weeks I was hospitalized due to dehydration and severe diarrhea. I was sent home after 7 days of fluids and vancomiacin. I not given any meds just to see the doctor. She gave me another 10 day dose of flagel.
    I went to the ER after 3 days of horrible pain and after giving fluids they made me an appt with a. Infectious Disease Doctor who gave me PREVALITE, 1 MILLION PROBIOTIC A DAY AND HAD ME STOP THE VANCOMYCIN. I am taking the PREVALITE FOR 15 Days. Have 3 days left. The test showed positive for c.diff with antigens but toxins A&B I am negative for. Stomach pain continues day & night.

    My 90 YO elderly father is currently going through a cluster of maladies which were all likely cause of him contracting C-diff.

    First of all, about 2 1/2 weeks ago in early December 2016 father got a mild chest cold ( assumably viral) with no fever, which quickly turned into laryngitis. Soon afterward he fell off his toilet at home trying to get up, apparently from weakness, something which father has had for a long time since before as the result of spinal stenosis, peripheral neuropathy and a series of slipped discs over his lifetime. Dad has had to use a walker these past seven years.

    After he fell off the toilet he was taken to the hospital where he was additionally found to have a dislodged kidney stone in his ureter, to big to have a lithotripsy, besides at this point Dad had been running an LG fever 100.3 So, they put him on a BS antibiotic and then the urologist performed a minor surgical procedure to insert a stent in his ureter to allow urine flow beyond the obstructed stone. Afterward, a catheter was inserted. While in the Hospital we ( my sister and I) had been vigilant about asking for Cdiff cultures ( my nephew had contracted it when he was 24 YO and ended up having an FMT a year later) So, we are familiar with antibiotic excesses. Personally, I have been taking probiotics of my own will for the past 8 years.

    After 3 days in the hospital, he was released to a rehab facility near his assisted living condo to help improve his weakness and to strengthen his ability to get up on his own to his walker. By this time Dad had grown weary of his hospital and rehab stays. Seven days into his rehab stay and after us requesting many c-diff cultures we were finally told he had it.

    Dumbfounded by the multiple series of events. he remains in a weakened state, along with residual laryngitis which still, exists, it is uncomfortable to hear this raspiness in his vocal chords makes him sound even weaker.

    We are not sure whether he ‘contracted’ C-Diff or acquired it from the multiple antibiotics or his stay at the rehab, a very likable new wing which is cleanly and with nice attentive staff.

    So many questions, no real answers.

    At 90 and considering all his factors we are wondering if others have had similar multiplicities and complications which had a positive outcome.

    my husband contracted cdiff while he was recouping in a nursing home from surgery. he spent two weeks with chronic diahrea and thought he was going to die before they got it slowed down. He had surgery for necrotizing fasciitis on his bottom, and they left he lay in his own feces for an hour one day before anyone even answered his light! No matter how much I complained or raised hell at the desk! It was devastating to him and me. How can this happen in this country? He is home now, but the home health care nurses tell us it could come back, even though his stools are formed again. I have enough health problems of my own, and I don’t want to contract this! Even cleaning the stool, and washing our hands may not prevent this. I don’t understand what more we can do. This is another life threatening problem in our home!

    I received a phone call earlier about a text I sent. It’s in regards to a lady that has breast cancer and has been diagnosed with c-diff. The message sent was advising me your org does not in any way help with cleaning of her house and just to use bleach. My text is to say she has no family members and is having to go to physical therapy for twenty one days. With her health issue of breast cancer and now c-diff I personally don’t think she is able to clean. My hope is that your org could assist in this matter. For sure there is no non profit cancer center that is willing to help. While you say bleach is the solution my concern is how she is going to do it. I’m not family and disabled myself and looking for a center willing to help this lady out. Thank you.

    Could someone please contact me. I acquired
    C. diff in Feb 2015. I need help please?

    Thank you

Comments are closed.

Post a Comment

Page last reviewed: September 26, 2023
Page last updated: September 26, 2023